To ask for your experience with epilepsy? First appointment with the Neurologist

[87SPD]

Hi there,

I posted a few weeks ago worrying I had a brain tumour following a first seizure and subsequent headaches and symptoms. Since then I have had a CT scan and the doctor said nothing sinister was showing thank goodness but I have been referred to Neurology. I have my first appt on Thursday and just not sure what to expect?

Since my first seizure (lasted over 5 mins, loss of consciousness) I have woken in the night with all my legs, tummy and arms stiff as a board and my jaw clenched shut, I was sort of aware what was happening but couldn’t speak and then the next thing I remember is waking up and shouting for my husband - I then felt ‘hungover’ all the next day and just spaced out.

I have also passed out since but as I was on my own I am not sure if it was a seizure or not I just came round on the floor and felt like I had been drinking. I haven’t touched a drop of alcohol since before the first seizure.

Does this sound like potential epilepsy? I was also diagnosed with atrial fibrillation although my GP believes the seizure triggered the rapid heart rate.

Any advice from people who have experienced Epilepsy or similar symptoms would be soooo appreciated right now. I am 34 and usually fit and well.

Thank you 😊

Shameless Bump

I have had epilepsy for over 50 years. Your night time episodes sound like seizures. You can buy pillows you can breathe through and I have one just to be on the safe side.

The neurologist will talk to you about your scan and what it showed, and will say whether or not he thinks you have epilepsy. If you do, don't panic. The drugs are very good these days and once you've done two years clear of seizures you'll be cleared to drive again.

There's little you can't do, but I don't recomment swimming alone. And I was told not to take up rock climbing!

It isn't the restrictive diagnosis it used to be, so don't be too worried.

I don't think I have had a restricted life but there is no doubt that a "regular" lifestyle benefits epilepsy.

My triggers are hunger, stress and tiredness. All three together at the same time are a danger point, so I do try to avoid that situation. I remember when I was in labour with my son the midwives were shovelling sandwiches in my mouth to stop me feeling hungry 😂

Thank you so much for sharing your experience. It has been a bizarre few months and I feel like I no longer trust my own body so to be honest if it is epilepsy I will almost be relieved as they can provide medication and like you say it isn't a restrictive diagnosis as such. At the minute I am too afraid to even have a bath on my own let alone take up rock climbing 🤣!

Good that you know your triggers, I can't imagine being in labour would help the tiredness and stress ones lol!

Thanks again!

In my experience it was a year of watching , waiting and recording incidents of seizures, investigations (mri, cat scan, EEG and finding nothing) and speaking to a counsellor for stress when finally after just over a year neurologist said ok it's epilepsy here's a prescription (sent via nhs app, no appointment to explain medication or diagnosis).

It really wasn't an easy journey because seizures kept happening at no logical pattern and it was just waking up or coming to in hospital with burst nose or chin and ok you've checked fine out go home.

Wow that sounds awful! Which NHS trust are you under if you don’t mind me asking?

I can’t believe they left you like that for a year whilst having seizures! I really hope that is not the norm. How stressful it must have been for you!

Did your tests come back with anything or was the diagnosis based on your account and history of seizures?

hope you are doing much better now that you are on medication?

I was diagnosed in my late teens in New Zealand (where I am from), over 10yrs ago. I have absent seizures (brief periods of unconsciousness with jerking). It became very apparant they were stress induced it, I had them before exams, stressful assignments, bad days etc. How I survived first year of uni I do not know. They were uncontrolled for a year and took six months to diagnose, but absent seizures are harder to diagnose, and given my dad and granddad died of heart attacks young I had every heart test under the sun, then I also got referred to anxiety counselling because they thought I had not dealt with my dad's death properly.

I had a CT scan, then an EEG which diagnosed me with epilepsy. I still remember the words to this day from my neurologist "you have abnormal brain activity". I then had an MRI to rule out tumours, leisions etc. First lot of medication sent me straight to A&E because I had such a severe reaction. Second medication didnt work so then I got admitted into hospital for a 48hr EEG.

Eventually they also put me on a benzo and increased my dosage of my epilepsy medication. I have been seizure free for about a decade. The thing with epilepsy medication is getting the correct dosage to control your seizures. Different epileptics have different dosages of medication so there is a bit of trial and error. I live a relatively normal life now, I can cope with a few drinks, I can drive, yes popping bills is a PITA but it could be a lot worse so I do count myself lucky.

Also, sodium valproate.(also known as epilim) is known to cause birth defects in babies, I highly doubt your neurologist would put you on that unless its worse case scenario because you are of childbearing age but I thought I would give you a heads up.